Migraine, chronic or not, has a profound impact on those who experience it, yet even well-meaning family, friends, coworkers and health care professionals often think of it as “just a headache.” An Open Letter to People Without Migraine was intended for my personal Facebook page — until I realized the message was too crucial to limit to a private sphere and decided it belonged on Migraine.com. It begins:

I have a migraine attack 28 days a month. I tell you this not for pity or shock value, but to beg for a smidgen of your comprehension. I want you to understand that migraine is not a bad headache, but a neurological disorder that affects every system of the body. You see, the unbearable head pain that migraine is known for is only one symptom of the illness.

“Comorbidity refers to the greater than coincidental association of separate conditions in the same individuals. Historically, a number of conditions have been noted to be comorbid with migraine, notably psychiatric disorders (anxiety, depression, panic disorder), epilepsy, asthma, and some congenital heart defects.”

This quote is from an abstract of an article from the June 2005 issue of Current Opinions in Neurology. A comorbidity never included on the list is guilt. OK, so guilt isn’t exactly a illness, but you have to admit there is a “greater than coincidental association” of guilt in people with headache.

We feel guilty because we think we’ve done something to contribute to the pain. Maybe it was getting too worked up over that deadline, eating a trigger food, staying up too late with friends, not drinking enough water, oversleeping. We lie in pain, berating ourselves for whatever we did that caused this headache.

We feel guilty because our partners, parents, kids or friends take care of us when we’re sick. Not only that, they have to pick up the slack of the of chores, errands and responsibilities that we couldn’t take care of.

We feel guilty because we call in sick to work, cancel plans with friends, sleep too much, tell everyone around us to be quiet, have dust bunnies under our beds and in the corners and even in the middle of the dining room table.

We feel guilty because we don’t go to our kids’ soccer games, return phone calls, stop to chat with neighbors, enjoy the sunshine/snow/rain, take the dog for a walk, cook dinner.

While our heads pound, we rage against ourselves for demanding to be the center of attention, not doing our duties, spoiling plans, being unsociable. Our guilt entraps us not just because we let other people down, but because we let ourselves down. Every day. We know we could do more or be better or care for others if we weren’t so weak or lazy or crazy.

We tell ourselves this isn’t true. We may even know it academically. But it’s hard to believe when we’re laid up, cooped up, fed up.

On one of the headache forums I read, a member I’ll call Jane posted that a family member told her that Jane causes her migraines from the guilt she has about conflict in her life and fear. Receiving daft unsolicited advice is one of the side effects of illness that most doctors don’t warn you about.

Those who give advice, whether it is legit or absurd, are probably truly trying to help. It is hard to see someone suffer so much and not be able to fix the problem. Unfortunately, the advice often comes off as judgment, implying (or saying straight out) that we bring on our pain ourselves. How many with migraine haven’t wondered if this is in fact the case? We don’t need someone else to doubt us; we do that plenty on our own.

I rarely stand up for myself in situations like Jane’s. It just doesn’t seem worth the energy. But if my current outrage is any indication, I’m harboring much resentment about such advice. I need to speak up.

How will I tell misguided advisers thanks, but no thanks? There’s the polite: “Hmm, that’s an interesting idea.” Or the oh-so-nice and passive-aggressive approach: “Thanks for your concern, but I have a complex neurological disease that can’t be cured with platitudes.” I’m partial to: “Buzz off” (perhaps replacing “buzz” with a stronger word).

My response will depend on the person giving the advice and if I think it is offered out of kindness. How fed up I am that particular day will surely be a factor too.

Welcome to Kerrie Smyres' writings about chronic migraine, headache disorders, chronic illness & depression. Here you'll find coping strategies, resources, news & more to help you live a fabulous life with chronic illness.